I write this on Christmas morning 2012. On this day 10 years ago my father died in the West L.A. Veterans Hospital Nursing Home. It‚Äôs a tough holiday, but it raises important issues for me that I hope you will find worth considering for yourself and your family.
In my family, my mother was the realist. She was the one who insisted on wills, pre-burial insurance, advance healthcare directives and DNRs, or “Do Not Resuscitate” orders.
I am grateful, too. When their deaths came, I didn‚Äôt need to think about what to do, I just called an 800 number and the mortuary came to take their bodies, the physical manifestation of their lives. Their spirits, of course, remain within me.
My mother‚Äôs doctor is my doctor, Robert Ashley of Santa Monica Bay Physicians. And he‚Äôs written an important book that I hope you‚Äôll consider before you need to think about how to help your family through end-of-life issues. It‚Äôs called “Beautifully Absurd,” for sale as an e-book on Amazon.com and Barnes and Noble.
I can relate to it all too well.
I took care of mom for nine years, and her decline was more gradual than dad‚Äôs, so we had time to discuss her wishes. Not easy, these conversations, but boy am I glad we had them.
Although we had an advance directive, dad got slammed in his final year, everything from diabetes to prostate surgery, vocal cord paralysis, kidney dialysis, atrial fibrillation, congestive obstructive pulmonary disease, and the inevitable bedsores. He was a mere shadow of himself, subjected to the indignity of being completely dependent on people and machines for almost all his bodily functions. His world shrank to the size of his bed.
After being at his side through a relentless number of emergency room calls, and watching him lifted like a slab of meat from gurney to bed, his situation seemed to me to be pointlessly cruel.
A consultation with a doctor who also believed it was pointless led me ‚Äî faced with the ungodly responsibility of making his medical decisions ‚Äî to order the end of his medications and treatment. A few days later, on Christmas eve, mom and I said goodnight to dad, not knowing it would be the last time.
When we got the call at 8 a.m. that he had died at 5, we rushed to the nursing home, only to find him already in a body bag. It was a very stark moment; I felt his forehead through the bag and it was so icy cold. Christmas would be forever marked by this moment for me.
Doctor Ashley‚Äôs e-book is about the importance of thinking ahead to the unthinkable, planning for the unplanned events that occur at life‚Äôs end.
This is a situation the baby boom generation faces daily and can no longer be considered unexpected. We must be prepared.
Much of the book is a conversation protagonist Paul Mathews is having inside his head, reviewing his life, his love, his friends, his failures, the bad living that led first to his heart attack and the condition he finds himself in now, suffering a massive stroke, being kept alive by artificial means and wondering why he should be.
Paul‚Äôs son does not want to make the hard decisions about his father‚Äôs life, leaving Paul in the netherworld, tethered to machinery, unable to live without mechanical or medical support.
It is also about the unbelievable number and kinds of treatments applied to a patient beyond the point when the possibility of any kind of quality of life exists.
It‚Äôs a compelling narrative, convincing fiction about an all-too-true reality, and an engaging story about Paul, his ex-wife Sarah, his son Jacob, his primary doctor, and his desperate need to be anything but “an average Joe.” Despite dreams of being a journalist, then novelist and changing the world through his words, Paul has ended up being very much the average Joe.
I asked Dr. Ashley what inspired him to write “Beautifully Absurd.”
“I had the idea for the story 10 years ago when I had an 82-year old demented patient who had no ability to interact with her environment. This patient had a tracheostomy connected to a ventilator and was receiving artificial feeding by a gastric tube. She had been living like this for years and she was a ward of the state.
“She had a son living in Sacramento, but for some reason he couldn‚Äôt make medical decisions for her. Instead she had a conservator who just kept her alive staring at the ceiling. It made me think of the many instances in the ICU and in long-term facilities where patients are kept in a vegetative state.”
It took Dr. Ashley ‚Äî a very busy doctor as I can personally attest ‚Äî 10 years to write “Beautifully Absurd.”
“The time to write this came thanks to my son,” he told me. “In the first three years of his life he woke up frequently at night. Since I had difficulty returning to sleep, I would write. But even with that time, it took me 10 years to write this.”
His inspirations include, “Doctors who care, patients who have a story to tell, writers, like Ralph Waldo Emerson, Leslie Marmon Silko, John Steinbeck, who want to change social consciousness.”
Dr. Ashley‚Äôs goal is one I endorse: “I want people to read this and hopefully be more mindful of their deaths so that they fill out advanced directives and convey their wishes to their loved ones.”
And Dr. Ashley practices what he preaches. “I have one,” he said. “It is more elaborate than the typical one. Mine is through Five Wishes [www.agingwithdignity.org/five-wishes.php]. There‚Äôs also a form for the state of California that you can get online by visiting oag.ca.gov and searching for ‚Äòadvance health care directive.‚Äô”
If there‚Äôs one lesson to be learned from “Beautifully Absurd,” Dr. Ashley said, “Don‚Äôt be afraid to talk about death. It is always around the corner. But the corollary to that is that each one of us should appreciate this time we call life and hopefully, with that appreciation, there is less suffering when we die.”
Sarah A. Spitz is a former freelance arts producer for NPR and former staff producer at public radio station KCRW-Santa Monica. She has also reviewed theatre for LAOpeningNights.com.